Seeking Calm (Hopeful Parents)

I'm over at Hopeful Parents today, writing about anxiety again (and my first attempt at meditation).  I'm tired of the anxiety and I'm tired of writing about it. I figure you might be tired of reading about it too, so after I drafted that post last night I wrote a whole other, more hopeful, post about Oscar.  I'll share that here sometime this week...but the truth is the anxiety is ruling me right now, so that's what I posted after all.
 

Hawaii

We returned from Hawaii exactly a week ago tonight, and yes, it's taken me this long to post! The trip was in honor of Paul's parents' 70th birthdays and so we were there with them, Paul's two sisters and our niece -- and had such a wonderful time.

We stayed in condos overlooking a cove just around the corner from Napili Bay and enjoyed this amazing view from our balcony.  I loved falling asleep listening to the waves knocking against the rocks, and, a whole week later, I still miss the sounds of the water and breezes at all times of the day.

We went to a luau with the men and kids wearing these matching shirts and dresses.  (Notice that I'm hidden in the back in my boring brown dress). We all felt a little silly but it was fun.  Abe enthusiastically responded to the call for volunteers to learn the hula dance up on the stage, Ruby took dozens of pictures of the dancers, and Oscar was wide-eyed and keeping the beat with the drummers all evening long. 

We realized (thanks to facebook) that old college friends were staying just up the road from us and so we enjoyed an hour reminiscing over a glass of wine at sunset on a gorgeous point separating Napili from Kapalua.

We have at least five pictures of Oscar wearing this hat -- is it Paul's or Grandpa's? I'm not sure, but I think it looks best on Oscar.

Oscar wasn't so excited about getting into the ocean (except for snorkeling) but he swam laps in the pool, and then cozied up in towels on the pavement afterward.

We tried surfing, and I thought I'd be really good, but I really really wasn't. Abe did well, and so did Paul's sister and my niece, and Paul too actually. Really, everyone but me seemed to get it.

We snorkeled nearly every day, exploring most of our favorite spots from years past.  We swam with the turtles in the cove, and drank wine on the "grassy knoll" overlooking the cove at sunset.  We boogie boarded (even backwards)...

gazed out at the cove and drew pictures...

...and built sand castles.  Oscar started and finished a castle all by himself one day with no help or suggestions from anyone.  (Sometimes I don't realize how much help, or rather how consistent his need for help is, until he does something completely independently.)

 

Can you see it? He's pretty proud.

And Paul, Abe, and I read most of the Suzanne Collins Gregor the Overlander series. I'd brought lots of books about writing, a memoir or two, and one novel, but I didn't read any of those. Instead I got completely sucked into this five volume series and only finished last night.  I loved diving into a wildly different world, and then discussing plot and character development with Abe.  He says, by the way, that the Hunger Games trilogy is better, so that's what I'll read next.

I found, though, that despite the glorious setting and fun adventures, that I couldn't escape my anxiety in Hawaii. The breathtaking views, warm trade winds, crashing waves and the sugary sand were all incredibly soothing to me during the day but I really struggled at night. I woke in the wee hours and could feel the panic start to fill my head. I practiced my breathing and focused on comforting images but the stomach pains and racing thoughts persisted.  (Our mediation with the school district is on Wednesday and I can only assume that thoughts of that meeting were invading my calm.) 

On our last afternoon, I sat on Napili beach and concentrated on the contented calm that filled me in that moment as I breathed in the swaying palms, shimmering water and billowy clouds.  I promised to start making some changes to help reduce my anxiety and feel more fulfilled no matter how busy and stressful our days are sometimes.  I need a daily practice.  I don't know yet what that looks like, but this photo brings me hope that I can figure that out. 

 

Aloha!

Ready!

I'm really really ready for our trip to Hawaii tomorrow.  We're not packed, but we're close. The couch and the chairs in the living room are covered with neatly folded clothes sorted by kid. One chair holds the long pants and sweatshirts they'll wear on the plane but everything else is shorts and bathing suits and water shoes.  I've chosen small games for the condo, pulled out some markers and paper and books for the plane and even remembered to dig the life vests out of the depths of our garage.

The last time we went to Hawaii Ruby was only two years old and still in diapers. Her hair was really blond then and the freckles that dot her face now had yet to appear.  She spent a good part of the trip obsessed with the song B-I-N-G-O and sang it over and over B-I-ENGINE-O, B-I-ENGINE-O. She cracked up when we showed her a video of her two year old self singing those modified lyrics.

Four years later she still sings as she plays. Just yesterday, while Oscar was in his after-school music class, she and her friend made a cube shaped drum out of large colorful plastic puzzle pieces and beat it with shovels while parading around the school yard singing in Spanish. They sang for an hour, sometimes joined by others, and it made me so happy to see her so engaged and comfortable at school.

Oscar was in Kindergarten four years ago, and the exact age Ruby is now.  I remember that it took days to convince him to try modified snorkeling. I knew he'd love watching the brightly colored fish swim around him but he was resistant. He was scared. When we finally got him out into the bay with a boogie board for support wearing just the mask and not the snorkel he couldn't stop giggling.  He was still anxious, working at the brink of his ability, but loving the experience too. I pulled up this picture last night to show Ruby, very well aware that knowing that Oscar snorkelled when he was only six would ignite her competitive spirit.

This time Oscar can't wait to swim with the giant sea turtles that reside in the bay outside the condo. He's talking about it perseveratively and I had to remind him on the way to school that his classmate who was smooshed next to him in the backseat of our little Prius for the third day straight listening to Oscar's stories about Hawaii might start to think he is bragging.  I switched the subject to today's school-wide book swap and thankfully Oscar transitioned.

This picture also helped Oscar get mentally prepared for snorkeling again.  I can sense a little anxiety creeping up (will the turtles bite my toes?) but having proof that he's done it before, as a teeny little kindergartner, is so helpful to him.

And Abe was only a third grader, just eight years old, when we made this trip four years ago.  He seemed so old then, as he does now, and it makes me wonder if I am inadvertently pushing him too hard to grow up.  (We've been arguing these past two days over responsibilities -- me pushing for more organization and accountability with schoolwork, but is that too much to ask at age 12?  I don't know.)  At eight he snorkeled from a boat out in deep waters, skim boarded on the shore, played paddle ball and shuffle board and catch hour after hour.  He plans to do the same this time, and we've made a pact to try surfing.  We need that time together, hopefully laughing as we fall off our boards, as these past weeks have been full of stress and arguments.

Obviously returning to the same area as before is allowing me to reflect on what has changed in the past four years, and what is the same. I also can't stop remembering that four years ago in Hawaii was the beginning of the six months of dizziness that eventually caused me such debilitating anxiety that I called my primary care doctor one night and asked her to prescribe something, anything, to make it stop. Instead of driving the two miles to the pharmacy to pick up the prescription I walked. I walked and walked those six months, trying to calm my body while the dizziness just increased. Evenutally a brilliant neurologist prescribed vestibular exercises that zapped the dizziness in a mere two weeks. I still consider that one of the miracles of the last decade.

I've chuckled too as I've pulled out summer clothes for this trip. The skirt Ruby is wearing below still fits her. It was too long then and a bit too short now.  The orange hoody and blue Keens that Oscar had on fit Ruby now and the bathing suit that Abe is wearing above still fits Oscar. There's comfort in that cycling of clothes. (And Paul is wearing that shirt to work today and probably on the plane again tomorrow. I'm not a fan of Hawaiian shirts but Paul is and you will likely see one in every picture I post.)

There's comfort too in knowing that we will swim with the turtles in the bay. That I'll walk the sandy path from the nearby crescent beach and over to the next one and up past the new condo development to the more secluded oceanside path to the north. There's comfort in going to our favorite taco shop and the farmer's market and hiking down to the blow hole and experiencing the water bursting up like a geyser through the holes bored in the lava shelf from years of tide and wave action.

When I was younger the thought of returning to the same vacation spot probably would have bored me. But so much in our life now is unpredictable and often stressful that I'm looking forward to visiting a favorite spot and relaxing into the familiar soothing routines. We really need this vacation.

So one selfish wish: Obama, I know you are flying out of SFO tomorrow at the exact time that we are. Please please don't close the surrounding roadways so that we can't get to the airport. I don't mind if you have to freeze the air space for a little (little!) while...but at least let us get on our plane. This vacation means too much to us to miss.

Goodbye January

January was not a great month. 

I wrote vaguely about our IEP troubles over at Hopeful Parents, but I left out that Paul was in Spain for ten days and that while he was gone I got sick.  Ruby mysteriously hurt her hip and could hardly walk. I spent days preparing forms and collecting files for Oscar's neuropsychological assessment.  I still fed and transported the kids.  I also spent every evening (or so it seemed) reviewing and commenting on the latest draft of the legal document that finally got filed last Wednesday.  The paperwork and advocacy that goes along with having a kid with special needs is mind-boggling.

Oscar's appointment with the orthopedist did not go so well either. His curve has progressed to 30 degrees.  Three years ago we started nighttime bracing when he hit the 25 degree mark, but we stopped bracing when he outgrew the device in April 2009.  With tons of exercise and luck the curve somehow improved to 22 degrees.  For three visits now we've seen an upward trend and it's time to get serious.  It's true that Oscar's not getting nearly the same exercise as he was this summer when he was swimming, horseback riding, working out with his PE teacher and riding a bike. At last week's appointment our orthopedist let me choose between a brace with intense core exercise or just intense core exercise.  I chose the latter but I've yet to make it happen.

Somehow, though, I'm feeling more hopeful about February.

It could be the weather.  February is beautiful this year..more beautiful than any of the previous sixteen I've lived here.  The bright sun, warm breezes, pink fluffy plum tree blossoms, and the glowing late afternoon light followed by the orange and pink streaked sunsets are all very soothing. 

It could also be that baseball season has started again and that we spent last weekend watching Abe's travel team play five exciting games at fields that are replicas of big league stadiums. The team played with such heart, coming from behind to earn three of their four wins. Oscar happily chatted with his many favorite adults, Ruby jumped rope and drew pictures of fairies, and I relaxed with friends and cheered the team on so enthusiastically that my voice was scratchy for two days.

It also helps that the "the document" is filed and the neuropsych testing is now behind us. While I fretted all weekend about Oscar being well rested for the eight hours of intense testing this week, he was more energetic and zippy during the testing than we've ever seen him.  I even worried that he was too energetic -- giving an inaccurate picture of his arousal levels and ability to focus. I think though that he just demonstrated again what a complex kid he is.

And I know it helps that we are going to Hawaii next week.  Looking at pictures from our trip there four years ago I feel the tension of the past few months dissipating.  I can almost feel the water lapping over my back as I attempt to swim from one end of the crescent shaped bay to the other. Almost.

And even though I know I don't always have to write about the good stuff I do feel freed up to write again. When my brain is muddled with deadlines and anxiety I do have trouble finding my words.  Or the words I want to write are too hard to face....their harsh reality more jarring than helpful.  Something to work on I guess, but for now I'm just grateful that January's gloom did not follow me too far into February.

Interruption

I'm interrupting my vacation silence because --

It occurred to me last night, as Ruby, Abe and I were driving south along I-91 in Vermont, that there is no way I could have done that two years ago: I could never have taken two kids from northwestern Connecticut to Vermont for two days, and back, by myself. I could never have left at dusk with a 3 hour drive ahead with conflicting navigational instructions, by myself. I certainly could never have followed those curvy Connecticut roads, names changing every 2 miles or so, in the dark, by myself.

Two years ago I was suffering from debilitating anxiety, provoked by the stresses of having a child with PWS, a demanding toddler, and some unexplained but persistent dizziness. No task was small. A trip to the pool was overwhelming, as was making dinner, or even a night out with friends.

So last night, as the sun was setting and a gentle summer rain just starting, I noticed that I felt hopeful and strong, not anxious, as I set out from my friends' verdant and peaceful Vermont home, towards Connecticut where I'd left Oscar with my inlaws just the day before. It was an easy trip and we were treated to a near-full rainbow and views of rolling hills and leafy trees painted in the deepest summer greens. We sang along to the Weepies and the Indigo Girls and the kids each took a nap. I joked with Abe that 18 years ago when I used to make this trip routinely to visit Paul in graduate school I didn't have mapquest directions, let alone a GPS or an iPhone. And yet, last night, I was using all three to help me navigate the last hour of dark and twisty backroads. I chose my route after consulting all three sources because it was fun and staved off fatigue.

It was a bit of an experiment for me to stay east while Paul returned to Berkeley for work. (Again, no way I would have volunteered to make the cross country flight solo with three kids, 2 years ago). The experiment is going well. Abe and Ruby loved our side trip north and it was very satisfying to me to share Dartmouth with them. The campus is so different from anything Abe has seen before -- so small, so contained, and so beautiful. We played frisbee on the green -- that large rectangle of grass crisscrossed by gravel paths in the center of campus where Paul and I played many an afternoon during our sophomore summer. We visited my dorm, and then Paul's and bought t-shirts at the co-op.

At my friends B and D's house, Abe and Ruby got to experience rural life. B and D have created a wonderful retreat-like home on 26 acres of Vermont land -- a spacious, airy, and light-filled house perched above their outdoor ice rink and, farther down the hill, their pond. My two kids romped and wrestled on the grassy lawn with their three girls with no worries of cars or other urban menaces. They raced off to the garden to pick bright orange carrots and sweet blueberries. We donned swimsuits and made the short trek down to the pond with its soft sandy shore. Ruby delighted in the newts and frogs they caught while Abe kept up a never-ending game of chase with an ever-changing fraction of the remaining girls.

This side trip is just a small segment of our vacation, sandwiched between time at the Jersey shore with my family and time at the lake in Connecticut with Paul's. And yet it stands out to me because the last time I was back east in the summer I was just starting to recover from those six disorienting and often disabling months of dizziness and anxiety. Last time I was here I was still fragile, and cautious. B once noted that I use the places I've lived to keep track of my life. Having moved so much as a child, place became a natural way to remember the small as well as significant events in my life. Now, living in one location as I have for so many years (14 years in Berkeley, 8 years in this house), it is harder to keep track of what happened when. Being east in the summer again has triggered this memory of anxious times and I remembered last night, that two years ago, when I was last here, I would not have been driving down I-91 with two kids in the dark and rain, alone.

And, even if I had, I would not have been singing loudly and enjoying the beauty of my surroundings and my children like I was last night.

I'm still here!

I've been quiet on my blog lately. There is just too much going on.

Some triumphs: The Los Mapaches concert was Saturday in San Francisco. All three kids performed! Abe sang out and actually moved his body to the beat. He played guitar for the first time on several numbers, drum on another. He looked so happy, so confident up there. Oscar's stage overwhelm is gone. He was "on" the whole time, and his face, while singing, emanated a beautiful mix of passion and sincerity. He led one song on stage with the bombo, helping to keep the beat for the rest of the musicians. And Ruby was a ham. She made sure each one of the 300 people in attendance noticed her as she sang, played zampona, and did the motions. What a night!

And some struggles: Oscar's IEP was also this week which is always a source of major stress for me. (Placement has historically been very very hard-fought.) This year was smooth but no one could tell me beforehand that that would be the case so of course I went through all the pre-meeting anxiety and post-meeting decompression. Abe's been having a very hard time at school. We're so sad, but also proud of him for how he has been keeping his chin up and continuing to try. I wish the last weeks of his elementary years could be sweeter but I also know that it is a gift of sorts to be ready for the next adventure. He is. I just wish he could take his 5th grade teacher with him to middle school. Oscar's stuttering is at an all-time high. He can stumble over one syllable ten times before he gets it out, his face contorted with the effort it requires. I love though that he can calmly admit that he is frustrated and I can reassure him that it will pass, because it always does. I feel blessed (and if you know me you know I rarely use that word) that he has the ability to converse so maturely. Finally, Ruby's tantrumming peaked last week to the point where Abe stood by my side and told me in a soothing voice that he had seen what happened. I was crying but I am not sure why. Because I don't always know how to help my 4 year old when she rages, or because my 10 year old can step out of his pre-teen fog and angst to validate my experience?

I am ok, just drained. PWS walk and 5th grade play this weekend on top of all the baseball games and practices that are the respite in our busy life.

Goodbye Sea Ranch.....

Today was a day of transition, away from the raw beauty of the California coastline, and on home to Berkeley. We loved the relaxed pace of Sea Ranch, the long walks on the bluffs and daily checks on the mama and baby seals. Fires in the hearth, puzzles on the floor, naps on the window seat, and evenings in the hot tub. We will be home for just 6 days before embarking on the next adventure, Shriner's Hospital St. Louis.

I treasured the drive south, giggling with delight and nerves at how high above the ocean we were winding along that narrow stretch of route 1. Sparkling blue expanse on one side and sheer cliff on the right. I loved it, pure and simple. Nothing makes me feel more alive than the ocean.

As the road straightened and we veered away from the shore towards the bucolic farms of Sonoma County, my thoughts returned to real life and the week ahead. A busy one, full of appointments, baseball games, practices, rehearsals, and possibly a talk to Oscar's 2nd grade class about PWS (an annual event that I keep postponing, for some reason, this year) I also need to bang out those darn social stories.

And, yes, somewhere in there we need to get ready for St. Louis. We're taking the kids to Shriner's for a 5 day inpatient stay to help answer our questions about their bone disorder hypophosphatasia. They will sleep in hospital beds -- all 3 in one room -- with Paul and me nearby on those bedside chairs. Blood draws, xrays, 24 hour urine catches...a whole battery of testing that will rival Oscar's NICU days.

I've not written too much about HPP here. A large part of me wants to think it is not a big deal and that it is my own obsessive need for answers that is leading us St. Louis. But we do have two positive genetic tests (Ruby and Paul) and the boys have clinical diagnoses. Ruby has lost 3 teeth, her xrays show mild osteopenia, and she is slightly knock-kneed. Abe's feet hurt if he runs too long. His broken arm spent 9 weeks in the cast and still wasn't completely healed. The orthopedist that treated him was an insensitive jerk and didn't believe that he even had HPP. He refused to seek advice from the HPP expert in St. Louis. We are lucky with Oscar. I know he has HPP, but I am thankful we just found out. So many of the early symptoms overlap with Prader-Willi syndrome that we might have missed the PWS had we noticed the hypophosphatasia. We would have missed the opportunity to set up the early food routines that I truly believe have helped him tremendously. And the growth hormone shots he receives nightly for PWS might even be helping the HPP, but they're not approved for HPP. But...we don't know how to treat the HPP given the PWS complications. Do we supplement aggressively with calcium (as recommended for PWS) or avoid it (as recommended for HPP). What about his scoliosis, and the surgery another orthopedist is recommending?

So, yes, it's good we're going St. Louis. We'll get answers, an emergency protocol, and a definitive diagnosis so I will be armed the next time a doctor doubts me like Abe's orthopedist did.

In my heart, I trust the kids will be fine, and that compared to PWS this is nothing. But still my anxiety levels are creeping up. I feel an undeniable lump in my throat, my thoughts are racing, and there is a panic rising as I lay to sleep. I am nauseous and short-tempered.

I am trying to keep the images of that beautiful green and blue sea lapping, and sometimes crashing, against those dark jagged rocks. I am trying to feel the cool spray on my cheeks and the wind sending my hair into impossibly sticky tangles. I am closing my eyes so I can hear the waves and recall the briny scent that inexplicably centers and calms me.

But the anticipation is still getting to me. We've been home for 3 hours and I've already snapped at Abe and placed Paul's computer down on the floor with a bit more oomph than I intended. My patience is waning as the overwhelm seeps in like, ha!, waves on the shore. Maybe that is the answer. Maybe each time I feel the panic rise I can envision it receding. Close my eyes and watch it wash back out to sea. I will try.

Goodbye Sea Ranch. Hello St. Louis.